A chain of faith, a gift of life

Medical staff keep a close eye on the time while working on a removed kidney, bottom left, during a transplant operation at St. Paul’s Hospital.Photo by
Arlen Redekop

Jacqueline Nemeth was born with two kidneys, but today she has four — and she has no idea who the other two came from.

What she does know is that organ donations from two complete strangers have saved her life, twice. And that a national program, the Living Donor Paired Exchange, is making these anonymous gifts possible for others like her.

“It’s really opened up opportunities for recipients to search through all of Canada,” Nemeth said, sitting in St. Paul’s hospital with her husband Joe just six weeks after her second transplant.

“It is a leap of faith,” she said, “but it’s giving people who are hard to match ... a way to receive a kidney.”

The 46-year-old Langley mother of four suffered kidney failure at age 17 growing up in Calgary.

She was on peritoneal dialysis for three years before a kidney came through from a deceased donor. The donor’s selfless decision granted her more than 20 years of relative good health. But the organ began to wear out in January 2011 and St. Paul’s nephrologist and head of B.C.’s kidney transplant program Dr. David Landsberg recommended a transplant.

Friends and family were tested over the next year, but none were a match for her O blood type and antibodies. Hospital staff say the wait for an in-demand O-type kidney from a deceased donor in B.C. is up to eight years. Nemeth was feeling increasingly ill and didn’t have that long to wait.

Luckily, she didn’t have to. In early 2012, at her doctor’s urging, she joined the Living Donor Paired Exchange program.

In the registry, donor-recipient pairs whose organs are incompatible with each other can be matched with others in the same situation and the organs swapped to complete transplants. There are Good Samaritans — non-directed anonymous donors — who simply donate a kidney out of altruism also entered in the registry. Algorithms determine matches to optimize use of rare blood and antibody types: swaps that result can involve up to five-pair chains — up to 10 people in cities across Canada all intricately linked in a complex “domino” transplant.

The registry was founded as a pilot project in three provinces, including B.C., in 2009. It has since gone national and is overseen by Canadian Blood Services, which conducts three (formerly four) searches or “runs” a year.

To date, there are about 145 registered pairs.

More than 140 transplants have been performed, with the first cross-country multi-hospital swap in June 2009. Nemeth’s own chain involved three pairs: done at St. Paul’s and in Winnipeg.

The program not only shortens waits and saves lives, but it also saves money: dialysis costs $60,000 a year while a kidney transplant is around $25,000 plus $6,000 a year for medication.

Even before the national registry, provincial hospitals like St. Paul’s were doing ad hoc local swaps for just these reasons.

“We were basically doing these on the back of an envelope,” Dr. Landsberg said, adding St. Paul’s did its first regional domino transplant around 2006.

But the national registry has been a true game-changer. Because of it, he said, “the number of difficult to match patients who were stacked on that wait-list and who I predicted would be on there forever have been able to get transplants.”

And despite the tenuous nature of the chains, so far, he said, “We’ve never had a donor back out.”

Nemeth had registered with both her brother-in-law and sister (recipients can register multiple donors to increase matches) and in July, their number came up.

Nemeth was ecstatic, and grateful to her brother-in-law who provided the match. “I think it takes a really unique person to be able to do what he [did]. Selfless.”

But she was concerned about his health, and nervous about a potential break in the chain.

“Everybody in that chain has got to have that faith,” she said. “The person whose kidney I received, I don’t know who they are, I don’t know if they are male or female. They are giving their kidney in good faith that their loved one will receive one in exchange …. Everyone has to believe in the process.”

Halfway across the country, Sandy and Fred Lockhart were also putting their faith in the process when their number came up as part of Nemeth’s chain.

Sandy, a 42-year-old mother of two from Warman, Sask., was diagnosed with kidney disease in 2006. By 2010 she had to go on peritoneal dialysis. She wanted a transplant, but her antibody level was so high she was told, “the chance of finding someone without my antibodies was a one-in-a-million shot.”

Several friends got tested, but none panned out. Her husband Fred wasn’t a match either, but by mid-2011 he decided he would give his kidney to a stranger through the registry to help secure one for his wife.This fall, Fred had his kidney removed in Winnipeg while Sandy had one transplanted at St. Paul’s.

“He knew that by giving it to someone else, it was just like giving it to me,” she said, now back home and feeling better. “Whoever got his kidney, we pray it will do them good and last them forever, and we thank whoever gave theirs to me for their generous gift. It really is the best program.”

“I wish more people knew about it.”

Nemeth and her husband knew almost instantly after her surgery that the program worked.

“Before the surgery, her eyes were yellowish and clouded ... her circulation was so bad her hands and feet were freezing cold all the time, her skin was kind of an ashen grey colour,” said Joe. “When I saw her in the recovery room, she’s drugged and feeling terrible, but she opened her eyes and they were clear. Her skin had a pink colour to it and her hands were warm. I didn’t need to be a doctor to be told the kidney was working.”

Now, Nemeth said, “I can return to living as normal a life as you can with kidney disease. I just feel so fortunate to have received this second transplant. So far it is working beautifully and I am hoping it will continue to do so.”

The couple said they consider the care at St. Paul’s another gift.

“What they are doing at St. Pauls is remarkable, there is something different here,” Nemeth said.

“They are positive, they are professional, they are efficient and they care,” her husband added.

But both are aware that it is the selfless act of organ donation that really makes these second chances possible, and they hope their story inspires other donors.

“Don’t be scared to go online to register to be an organ donor,” Nemeth said. “You can’t take those organs with you. And there are just so many people in need.”

“You could fundamentally change someone’s life,” her husband added.

“It’s the ultimate gift.”

Specialized Kidney Donor Programs:

*Paired Kidney Exchange Program: This program was launched in 2006 to help living donors who are willing to give a kidney to a loved one but who are blood-type incompatible the ability to “swap” with another pair in the same situation so that both recipients can have transplants. About 30 per cent of living donors are turned down because of incompatibility. The program, run by Canadian Blood Services, has sped up the process of getting a transplant for those patients. Visit: www.organsandtissues.ca/s/english-public/living-kidney-donation.

*Living Anonymous Donor Program: Good Samaritans who want to celebrate life and health by donating a kidney or piece of their liver while alive, but without a target patient in mind can do so through this program. It was founded in 2003 in BC (the first province to introduce it). Donations remain anonymous.

*Living Organ Donation Expense Reimbursement Program (LODERP): This program, administered by The Kidney Foundation of Canada’s BC branch allows BC residents donating a kidney to apply for help with expenses related to donation, such as travel and loss of income. Visit www.kidney.ca/BC/LODERP for details.

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